One of the things that differentiates the way that families interact with their daughters and son’s with learning disabilities and or ASD, is the extent to which we consciously and subconsciously shape the culture of our everyday lives in order to mitigate against the potential for what you might call challenging behaviour. We know how to shape the day. We know how to manage the environment. We know the boundaries that can be challenged and those that must be respected. For most use of restraint and medication are rarely an option. Much of the time we will do this without support.
But in in-patient provision the situation is almost the opposite. According to statistics put together by Chris Hatton for the last campaign from the 2015 Learning Disability Census: 72% of people in in-patient provision where prescribed anti-psychotic medication in the 28 days prior to the Census date; 34% had been subject to physical restraint and 13% had been placed in seclusion. There seems to be little evidence of culture and environment being shaped to limit the possible incidents of behaviour that you might find challenging to manage but a lot of evidence of force and medication being used instead.
It reminded me of something I’d read in one of the articles that Mark Neary has written for the next Seven Days of Action:
Edward recalls that his treatment consisted solely of a huge cocktail of anti psychotic medication and because he tried to escape on several occasions, his treatment plan included the line, “Time in the seclusion room to be used as a teaching on the importance of cooperating with the medication treatment”. As Edward said, “I don’t think I can be treated. I’ve got autism”.
In this instance seclusion is self-evidently being used as a way of punishing an individual for failing to comply with the organisation’s regime. There is no adapting the organisation to Edward’s ASD, there is simply punishment, coercion and a requirement to accept the prescribed medication. Whilst there are occasions when a seclusion space can be used to de-escalate a situation and allow an individual the time and space to manage or be supported to manage their levels of arousal, the use of seclusion as a teaching tool on “the importance of co-operating with the medication treatment” has to be seen for what it is – cruel and inhuman treatment.
Another of the articles looks at the issue of danger and tackles head on safety and wellbeing in in-patient provision. It provides us with a number of profoundly disturbing examples of people being subjected to cruel, inhuman and degrading treatment. One example is provided by Julie who describes how Jamie had had his arm broken, Julie concludes by saying:
So here we have a situation where a vulnerable young man was put in a situation that he could not tolerate, asked to leave it and, when told he couldn’t, reacted in an entirely predictable, distressed way. The response of his carers was to break his arm and then not take him to hospital for 24 hours, ignoring the repeated concerns from family along the way.”
This quote is taken from Day Four: Danger and when you read it, it is clear that any practitioner who had incorporated Julie’s expertise into their practice would have been able to avoid creating a situation that distressed Jamie. Instead there was a presumption of compliance, an attempt at coercion, a confrontation and resort to excessive force. This is not indicative of an organisation that adapts its approach to the needs of individuals. Taken together with the data, the articles for this coming week paint a disturbing picture of a world that brings us worryingly close to what the United Nations defines as cruel, inhuman or degrading treatment or punishment.
Article One of the United Nations Convention against Torture and Other Cruel, Inhuman or Degrading Treatment or Punishment states:
For the purposes of this Convention, the term “torture” means any act by which severe pain or suffering, whether physical or mental, is intentionally inflicted on a person for such purposes as obtaining from him or a third person information or a confession, punishing him for an act he or a third person has committed or is suspected of having committed, or intimidating or coercing him or a third person, or for any reason based on discrimination of any kind, when such pain or suffering is inflicted by or at the instigation of or with the consent or acquiescence of a public official or other person acting in an official capacity. It does not include pain or suffering arising only from, inherent in or incidental to lawful sanctions.
For some people in this form of provision; being drugged, restrained or isolated for failing to comply with an organisation’s regime is a relatively common occurrence and whilst the term torture might seem excessive – describing some of the treatment of people with learning disabilities and or ASD as cruel and inhuman is not.
But let’s be clear – not all of the care provided in in-patient settings is cruel and inhuman far from it. Some of it is good, some of it is very good but in the stories from the families of young people detained. We see significant indicators of practice that too often falls short of what a civilised country has a right to expect for its citizens. Repeatedly we hear how people have deteriorated and in the statistics we see evidence that the use of force and the reliance on medication is systemic.
As families we view the evidence we see, and the stories of other families with genuine horror. We know that some organisations can hide a whole range of incidents behind closed doors and when that fails to work. They can silence challenges to their practice behind a veil of privacy.
As families we have to balance all of the rights of our sons and daughters. We recognise their right to privacy just as we recognise their right to liberty and freedom from cruel and inhuman treatment. In a different world a mother could stand in front of a judge and explain why her non-violent, non- medicated strategy for managing her son’s distress was more in keeping with the principles of the Mental Health Act Code of Practice than an injection of rapidly acting tranquiliser.
But until then, we will just have to rely on the cleansing power of transparency.
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